Caregiving for Children Prenatally Exposed to Alcohol

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Caregiving for Children Prenatally Exposed to
Alcohol

• Felicia Fago, PhD
• Educational Services Director
• Positive Education Program
• April 10, 2013
• The 34th Annual American Adoption Congress
  International Conference on Adoption
• Presented in Partnership with Adoption Network
  Cleveland

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• The problems kids cause are not the causes of
  their problems.
• Nicholas Long

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Learning Objectives

• Describe the physical and behavioral
  characteristics of children who have been
  prenatally exposed to alcohol
• Increase awareness about the prevalence of
  prenatal alcohol exposure
• List interventions and accommodations that can be
  used to help children who are at high risk of
  prenatal alcohol exposure, and their families

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Historical Perspective

• 1899 English study
• 1968 French study
• 1973 Ulleland, and Smith and Jones medical
  studies
• 1989 The Broken Cord by Michael Dorris
• Cited in Streissguth, 1997

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Definition of Fetal Alcohol Syndrome

1. Prenatal and/or postnatal growth retardation,
   where weight and/or length are below the 10th
   percentile when corrected for gestational age.

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Definition of Fetal Alcohol Syndrome

• 2. Evidence of central nervous system
  involvement small head circumference,
  tremulousness, poor coordination, learning
  disabilities, developmental delays, mental
  retardation, and behavioral dysfunction,
  including hyperactivity.

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Definition of Fetal Alcohol Syndrome

• A characteristic pattern of facial features and
  other physical abnormalities, including small
  head circumference, small eye openings and
  epicanthal folds, short upturned nose, low nasal
  bridge, flat philtrum, and thin upper lip, among
  others.

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FAS faces
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Definition of Fetal Alcohol Syndrome

• In order to receive the diagnosis of FAS, at
  least one characteristic in each category must be
  present, as well as some history of prenatal
  alcohol exposure.
• Malbin (1993), from Sokol and Clarren (1989)

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Diagnosis

• Problems with diagnosis
• We dont always know the mothers medical history
• Many children dont exhibit all of the required
  criteria
• Many are not affected by full FAS, but have
  hidden brain damage.

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• FAS
• pFAS
• ARND, ARBD
• FASD
• Static encephalopathy
• Neurobehavioral disorder
• Sentinel physical findings

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Prevalence of FAS

• Rates per 1000
• The average cited is from .1 to 3/1000 for FAS
• May, Gossage, et al. (2009) estimate that FASD
  occurs in 2 5 of the US population

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Prevalence - Current Studies

• Italy and Croatia estimate prevalence of FASD up
  to 40 / 1000
• S. Africa approximately 3 million citizens have
  FAS, 9 million with FASD (more than are infected
  with HIV)
• DeAar study (2002) 120 per 1000 (12)
• Aurora study 8 - 13 of the population
• Kimberly study 5 of the population
• Children adopted outside the US 28/60
  identified as high risk of prenatal alcohol
  exposure number is higher for former USSR (Fago,
  2012)
• Institutionalized children in Russia and
  Guatemala at high risk of PAE (Miller, Chan, et
  al.,2005)

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Prevalence of FAS Children in Foster Care

• University of Washington study of children in
  foster care in Washington state
• Every child in state custody is evaluated for
  exposure risk by the Fetal Alcohol Syndrome
  Diagnostic and Prevention Network
• Prevalence 10 to 15 per 1000 up to 15 times
  greater than in the general population
• This is done to identify children who need
  FASD-related services and to provide treatment to
  birth mothers

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Diagnosis of FASD

• URGENT! As social services professional it is
  not our responsibility to seek or force an FASD
  diagnosis on a child or family
• It is appropriate to help families and learn to
  design and use carefully chosen modifications and
  accommodations as you work with a child who
  presents any of these symptoms of brain damage,
  whatever the cause might be

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Why does this Occur? Teratology

• Teratogens are substances or conditions that
  disrupt typical development in offspring as a
  result of gestational exposure and cause birth
  defects.
• Alcohol is one of the most damaging teratogens
  and causes death, malformations, growth
  deficiency, and functional defects

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Variables in Outcomes

• Dose response relationship In general, an
  increased dose means increased manifestation of
  the disability
• Pattern and timing When and how much alcohol
  was consumed? Chronic, long term occasional
  binges light daily use
• Genetic makeup of the parents and child

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Permanent Central Nervous System Dysfunction and
Brain Damage

• Microcephaly small head circumference
• Head circumference strongly correlated with brain
  size
• Approximately half a study group of adolescents
  and adults with FAS were 2 SDs below norms for
  head circumference
• Some infants born with normal head circumference
  do not have the typical growth spurt, and are
  microcephalic by age 12 months

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Permanent Central Nervous System Dysfunction and
Brain Damage

• Small, incomplete development of the brain, with
  less wrinkles
• Small or absent corpus callosum, which connects
  the left and right sides of the brain
• 10 of individuals with Fetal Alcohol Syndrome
  have seizures

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Permanent CNS and Brain Damage

• IQ
• Even if IQ is within the normal range,
  individuals often have cognitive or
  neuropsychological impairments or problems with
  adaptive behaviors which are not measured on an
  IQ test
• Many of those affected seem to have a cumulative
  cognitive deficit the older they get, the more
  they fall behind, the more disabled they appear
• There is an increasing mismatch between their
  ability to function, and the academic and
  behavioral expectations others have of them

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Neurobehavioral Effects

• Neurobehavioral teratogen causes brain damage
  which modifies behavior
• Smaller doses of alcohol can cause
  neurobehavioral effects with no physical
  abnormalities visible the hidden disability

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Neurobehavioral Effects

• Hyperactivity
• Problems with response inhibition (inability to
  learn from mistakes or punishment)
• Attention deficits
• Lack of inhibition (no stranger anxiety, lack of
  modesty)

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Neurobehavioral Effects

• Poor habituation (ability to block out irrelevant
  stimuli)
• Perseveration, especially when stressed
• (Think of the kid who perseverates on small
  issues until they become unmanageable)
• Gait abnormalities
• Poor fine and gross motor skills
• Motor, social, and language delays
• Poor self-regulation and self-calming skills

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Co-morbidity

• Common disorders identified with FASD
• Aspergers Syndrome / Autism Spectrum Disorders
• ADHD
• Borderline Personality Disorder
• Bi-polar Disorder
• Conduct Disorder
• Depression
• Learning Disabilities
• Oppositional Defiant Disorder
• PTSD
• Receptive Expressive Language Disorders
• (Mitchell, 2002)

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Primary and Secondary Disabilities

• Primary disabilities are those that the child is
  born with
• Secondary disabilities are those that an
  individual is not born with, which can be
  lessened via appropriate interventions

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Primary Disabilities

• Permanent, organic brain damage
• Structural abnormalities of the brain
• Damaged hard wiring of the brain
• Attention deficits
• Damaged frontal lobe and executive function
  (planning and organization) skills
• Memory problems
• Hyperactivity
• Processing problems
• Sensory Integration Dysfunction
• Seizure disorders

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Primary Disabilities

• Average IQ of a child with FAS 79
• Average IQ of a child with FAE 90
• Streissguth, 1997
• In spite of these scores which fall within two
  standard deviations of the norm, adaptive
  functioning skills are not indicative of IQ scores

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Secondary Disabilities Six Major Areas

• Mental health problems Having received
  treatment for MH issues including ADHD,
  depression, suicide ideation or attempts, panic
  attacks, psychosis, behavior / conduct disorders,
  sexual acting out
• Ages 6 11 92 (61 attention deficits)
• Ages 12 and older 95 (gt50 depression)

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Secondary Disabilities Six Major Areas

• Disrupted school experiences Having been
  suspended or expelled, or dropped out of school
• Ages 6 11 12
• Ages 12 and older 61
• Most frequent learning problems attention,
  incomplete work
• Most frequent behavior problems peer
  interaction, disruption of class

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Secondary Disabilities Six Major Areas

• Trouble with the law Having been charged,
  convicted, or in trouble with authorities for
  criminal behaviors
• Ages 6 11 15
• Ages 12 and older 60

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Secondary Disabilities Six Major Areas

• Confinement Having been imprisoned for a crime,
  or received inpatient treatment for mental
  health, alcohol, or drug treatment services
• Ages 6 11 9
• Ages 12 and older 50

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Secondary Disabilities Six Major Areas

• Inappropriate sexual behavior Having repeatedly
  had problems with inappropriate sexual advances,
  sexual touching, promiscuity, exposure,
  compulsion, voyeurism, masturbation in public
  places, incest, etc.
• Ages 6 11 39
• Second highest occurring secondary disability for
  children
• Ages 12 and older 49

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Secondary Disabilities Six Major Areas

• Alcohol and drug problems Having had alcohol or
  drug abuse problems, and / or treatment of these
  problems
• Ages 12 and older 35
• Not reported as a problem for children
• (Streissguth, Barr, et al., 1996)

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Secondary Disabilities

• We know that secondary disabilities occur and
  can be ameliorated as long as we provide
  carefully planned, individualized programming and
  therapy designed to teach alternative behaviors.
  As professionals who work with troubled children
  and their families, it is critical that we
  provide this type of programming for children
  with FASD and their families. In this way we can
  become a protective factor in the lives of those
  with FASD.

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Risk and Protective Factors Associated with
Secondary Disabilities

• Risk factors are associated with higher rates of
  occurrence of secondary disabilities
• Protective factors are associated with lower
  rates of occurrence of secondary disabilities

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Risk Factors

• Having FAE rather than FAS
• Having a higher score on the Fetal Alcohol
  Behavior Scale (FABS)
• Designed to measure the behavioral phenotype (or
  visible expression of behaviors) of those with
  FASD
• Fall under two general headings
• Difficulty modulating incoming stimuli poor
  habituation
• Poor cause-effect reasoning, especially in social
  situations
• Having an IQ score above 70

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Protective Factors

• Five environmental factors which can be modified
• Living in a stable, nurturing, home
• Not having frequent changes of household
• Not being a victim of violence
• Having received developmental disabilities
  services
• Having been diagnosed before age 6

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Protective Factors

• Severity factors which cannot be modified
• Having FAS rather than FAE
• Having a lower score on the FABS (indicating less
  difficulty with habituation and more functional
  cause-effect reasoning)
• Having an IQ score lower than 70
• Streissguth, 1997

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Home Environment

• Uncluttered
• Everything in its place have a minimalized
  environment for the child
• Toys and materials should be handed out as
  needed, in a routine fashion
• Nothing hanging from the ceiling
• Minimal visual distractions on the walls all
  visual and auditory stimulation should have a
  purpose

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Home Environment

• Background noise should be minimized as much as
  possible
• Experiment with soft music to see if it is
  calming during structured and non-structured
  sessions
• Non-verbal cues should be used as much as
  possible to reduce the amount of verbal
  interaction

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Home Environment

• Color-code materials using a simple system (four
  colors, not twelve!)
• Photos can be used to show where things belong,
  even for older children
• Lighting and room colors should not be
  over-stimulating
• Keep the room temperature consistent, and have
  kids keep t-shirts or sweatshirts handy to help
  them maintain their own comfort zone

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Home Management

• Have a consistent daily schedule and follow it
  specifically
• If you must deviate from the schedule, give the
  children as much warning as possible
• Establish a routine for alerting the children
  when transitions will take place, and follow it
  specifically

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Home Management

• Have very limited, specific rules. Some children
  dont understand the vague Keep hands and feet
  to self
• Physically outline the childs personal space,
  such as by putting tape on the floor, or
  handprints at their seat at the table
• Consequences should be consistent, natural and
  immediately administered

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Home Management

• Though it is important to teach the child to make
  choices by providing opportunities to choose from
  various alternatives, limit the number of choices
  to avoid over-stimulation and frustration
• Provide two choices, either of which are OK with
  the caregiver
• Keep instructions and explanations brief

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Home Management

• Although the children will have varying ability
  levels, interact with all at their own level
• Teach the children to use brief lists and simple
  organizers
• When speaking, give enough time for the child to
  process

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Home Management

• Give directions using visual and auditory
  supports
• Use sequential, repetitive instructional
  strategies
• When teaching both behavioral and cognitive
  tasks, make it a practice to teach, re-teach, and
  re-teach some more

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Home Management

• Many of these children tend to mentally tire
  easily, in spite of the fact that they are overly
  physically active (ADHD-like) all day
• Be aware of their personal signs of fatigue and
  frustration, and help them recognize this in
  themselves
• Help them develop a plan, and identify a safe
  place to re-group and re-organize themselves, as
  well as to self-calm

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Home Management

• STRUCTURE, STRUCTURE, STRUCTURE! Plan and
  practice routines and rituals. Once the children
  learn these they will feel more relaxed and
  self-confident

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Specific Strategies for Specific Issues

• The following are some frequently occurring
  issues for kids with FASD, and ideas for
  proactive intervention

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Difficulty translating information from one sense
into appropriate behavior

• Children with FASD are able to repeat a direction
  but cannot translate from words into actions
• Check for understanding differently
• Use multiple modalities and minimal words
• Use simple timelines with photos and words

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Ability to talk about it but not do it

• Expressive language has some autistic-like
  characteristics
• Poor active listening and speaking skills

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Inconsistent mastery of skills

• Recognize that the children may never be able to
  memorize facts, and teach them how to use
  supports
• Teach all concepts in a rigid structure
• Focus on the 3 Rs, and life and social skills
• Teach, re-teach, and re-teach again

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Poor / inconsistent memory

• Routine and structure are critical
• Everyone who works with the child should use the
  same words and routines to cue the child
• Must have the structures in place to help them
  access their external brain

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Difficulty with generalization

• As much as possible, teach skills in real
  settings
• Rules must be re-taught in various settings
• Role play works if it is practiced along with
  practice in real settings
• Causes frustration for parents, teachers and
  therapists because we think they should know
  this

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Difficulty predicting outcomes

• Kids with FASD have difficulty understanding
  cause / effect relationships
• They make the same mistake over and over again,
  because they dont make the connection between
  event and consequence
• When you explain the cause of a problem, it takes
  the child a long time to process the information
  must be addressed over and over in a non-punitive
  manner

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Predicting outcomes

• As parents of children with FASD and
  professionals who work with families, we must
  become very skilled at recognizing strengths,
  weaknesses, and emotions in the children, so that
  we can catch them before the meltdown. We must
  practice skills when they are doing well, and
  then coach them to use the skills when they are
  in crisis.

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Difficulty distinguishing relationships

• No boundaries between family, friends, strangers
• People with FASD are often taken advantage of as
  a result
• Difficulty understanding boundaries concerning
  formal and informal interactions, sexual
  issues

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Difficulty with abstract concepts

• As early as possible, have kids use real money in
  real life situations
• May never be able to memorize math facts
• Need a rigid routine for budgeting
• No concept of time, 12 hour clock confusing
• Remember this information when youre working
  with parents who may have been prenatally exposed

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Cognitive delays in spite of normal IQ

• Processing of the stimulation in their world
  creates a chronic state of chaos for many
  children with FASD
• Many have sensory integration issues, and do
  benefit from sensory integration therapy
• Be aware of when sensory overload occurs

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Identification of feelings

• This process must be taught using direct
  instruction
• Repeatedly help the child connect an actual event
  to what he is feeling Trying to clean your
  room is making you feel frustrated
• We must teach the child to identify a variety of
  feelings beyond happy and mad
• Role play what to do when feeling hurt, etc.
• Practice using an appropriate physical activity
  to deal with feelings (taking a walk, listening
  to music, etc.)
• Create a Safety Plan

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Difficulty with self-regulation

• Repeated instruction of self-regulation
  techniques, such as Stop and Think
• Practice self calming routines (Be a turtle, go
  for a relaxing time out in the mat area, etc.)
• Warn of transitions the same way every time, and
  communicate with parents for consistency across
  settings

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Nesting
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8 Magic Keys Developing Successful
Interventions for Students with FAS Deb Evensen

• Concrete
• Consistency
• Repetition
• Routine
• Simplicity
• Specify
• Structure
• Supervision

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References

• Dorris, M. (1989). The Broken Cord. New York,
  NY HarperPerennial.
• Fago, F. (2012). Impact of prenatal alcohol
  exposure and pre-adoption placement on school-age
  functioning of intercountry-adopted children.
  (Doctoral dissertation).
• Malbin, D. (1993). Fetal Alcohol Syndrome Fetal
  Alcohol Effects Strategies for Professionals.
  Center City, MN Hazelden.
• May, P. A., Gossage, J. P. et al. (2009).
  Prevalence and epidemiologic characteristics of
  FASD from various research methods with an
  emphasis on recent in-school studies.
  Developmental Disabilities, 15, 176-192.
• Miller, L., Chan, et al. (2005). Health of
  children adopted from Guatemala Comparison of
  orphanage and foster care. Pediatrics, 115,
  e710-e717.

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References

• Streissguth, A. P. (1997). Fetal Alcohol
  Syndrome A Guide for Families and Communities.
  Baltimore, MD Paul H. Brookes Publishing Co.
• Streissguth, A. P., Barr, H., Kogan,
  J.,Bookstein, F. L. (1996). Understanding the
  occurrence of secondary disabilities in clients
  with Fetal Alcohol Syndrome (FAS) and Fetal
  Alcohol Effects (FAE). Final report to the
  Centers for Disease Control and Prevention (Grant
  No. R04/CCR008515). Seattle University of
  Washington School of Medicine.

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Additional Resources

• National Organization on Fetal Alcohol Syndrome
  (NOFAS), Washington, DC
• www.nofas.org
• FASlink
• www.acbr.com/fas/faslink.htm
• FASworld Canada
• www.fasworld.com
• Fetal Alcohol Syndrome Family Resource Institute
  (FASFRI)
• www.fetalalcoholsyndrome.org
• National Institute of Alcohol Abuse and
  Alcoholism (NIAAA)
• www.niaaa.nih.gov
• Substance Abuse and Mental Health Services
  Administration (SAMHSA)
• www.samhsa.gov/centers/csap/csap.html

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Additional Resources

• British Columbia Ministry of Education
• (has extensive resources on educational
  programming for children with FASD)
• www.bced.gov.bc.ca/specialed/fas/
• FASALASKA
• www.fasalaska.com
• Fetal Alcohol and Drug Unit
• www.depts.washington.edu/fadu
• Fetal Alcohol Syndrome Community Resource Center
• www.fasstar.com
• Evensen, D. Lutke, J. Successful Intervention
• http//www.fasalaska.com/8keys.html
• Kulp, J. (2002). Our FAScinating Journey.
  Brooklyn Park, MN Better Endings New
  Beginnings.

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Additional Resources

• Greenspan, S. I., Weider, S. (1998). The Child
  with Special Needs. Cambridge, MA Perseus
  Publishing.
• Kleinfeld, J., Wescott, S. (Ed.). (1993).
  Fantastic Antone Succeeds Experiences in
  Educating Children with Fetal Alcohol Syndrome.
  Fairbanks, AK University of Alaska Press.
• Mitchell, K. T. (2002). Fetal Alcohol Syndrome
  Practical Suggestions and Support for Families
  and Caregivers. Washington, D.C., NOFAS.
• Sousa, D. (2001). How the Special Needs Brain
  Learns. Thousand Oaks, CA Corwin Press, Inc.
• Toward Inclusion Tapping Hidden Strengths
  Planning for Students Who are Alcohol-Affected.
  (2001). Manitoba Education, Training and Youth,
  School Programs Division. Winnipeg, MB.